6 Tips to Help Parents of Chronically Ill Children Cope Better

There’s nothing easy about having a child who is chronically ill. Watching them suffer is heartbreaking, and you likely feel that no one else understands what you and your family are going through. You’re probably exhausted from juggling doctor’s appointments, therapy appointments, hospital stays and caring for your child at home. Finding time for yourself, your significant other and your other children may feel next to impossible.

But the truth is, you deserve care and time, too. You can’t pour from an empty cup, as the saying goes. Here are six tips to help parents of chronically ill children cope better.

Find your support system

Finding your community will be incredibly important. Reach out to family and friends, and don’t be afraid to ask for help. People will give what they feel comfortable giving. Some may not show up, but others will, and you will soon discover the helpers in your life. Don’t be afraid to ask for help with cleaning, meals, childcare, driving or whatever you’re feeling overwhelmed by. 

Talking with friends or family is helpful, too, even if they don’t have a sick child.

“You may worry that since you’re not experiencing the same things as friends and family, that talking to them won’t be helpful, or they won’t understand,” says Alyssa Barnes, Fraser day treatment service lead. “However, just being able to express how you’re feeling can be a relief.”

You should also lean on your healthcare team. At Fraser, in addition to physical therapists, occupational therapists, and mental health professionals, there are care coordinators, case managers and other support staff who help families in need.

Look for a parent or family support group. Social media platforms, like Facebook, offer many types of networking and support groups for those dealing with a variety of conditions and diagnoses.

Consider family therapy

Family therapy can also be a great support. If you’re struggling to cope with your child’s diagnosis, family therapy can help you explore feelings with your spouse or partner and learn more about what resources and supports are available.

“Family therapy is also a safe space to vent how you’re feeling,” says Barnes. “Having an outside perspective can be really validating.”

It’s okay to be vulnerable

Every parent has bad days. Maybe you snapped at your child or significant other, or forgot to pick up supper on the way home. Barnes says it’s important to remember that there will be a tomorrow and an opportunity to start over. It’s also okay to show vulnerability in front of your child when you’re having a hard time.

“We all have feelings and emotions. Society may tell us not to be vulnerable, but it’s part of being human. It’s also an important lesson to teach your child,” says Barnes. “Don’t push your feelings down, and pretend your feelings aren’t there anymore.”

Take time for yourself

When you’ve got a child with a chronic illness, finding time for yourself can feel impossible. That’s why finding your community and asking for help is so important. The idea that you have to do it all by yourself is ridiculous. Psychology Today states, “This paradigm — that it is my personal failing if I don’t conquer a difficult situation on my own — is such a part of our Western ethos that a family may not even notice its influence. While self-sufficiency is useful, a family's resiliency increases when they welcome and accept assistance from community, family or friends.” When you accept help from others — whether that is a therapist, your mom, a friend or a spouse — you can make time for self-care.

Sometimes, even just an hour alone can restore your sense of self. Because when you’re exhausted and overwhelmed, you aren’t the best version of yourself. That makes it nearly impossible to be a good parent, especially when you’re caring for a child with high needs.

Find time for your other kids

Siblings of children with high needs often feel ignored or less special. While that’s certainly not your intention, it can be a side effect when you must focus care and attention on your child with chronic illness. So, it’s important to spend one-on-one with your other children. Maybe your significant other or your parent can step in while you take your child to the park, a hockey game or out to ice cream. Or maybe, you allow them to stay up late (after your other child is in bed) to watch a movie together. Even small pockets of alone time can make a difference. 

The American Psychological Association also suggests, “Make them part of the team; help them figure out how they can be involved in caring for their brother or sister.” This will help your child feel more included and less ignored.

Learn to let go

After learning your child has a chronic illness or debilitating disability, it’s typical to mourn the loss of the life you thought they’d have. Your child’s life can still be beautiful and full, but it will likely look much different than you’d imagined. Once you let go of the imagined future, it is also important to learn to let some other things go. It could be your regular cleaning schedule, cooking from-scratch meals, mowing the lawn every week or attending the office happy hour.

Simplifying your child’s schedule might also be helpful. Though your child may benefit from several types of therapy, it might be better for your family and child’s well-being to not do them all at once. Your child might find it overwhelming to learn all these skills at one time, or perhaps, you and your partner do. You also want to leave time for play and joy.

“It’s important to celebrate your wins,” says Barnes. “You don’t want to be so focused on the future that you forget to enjoy the present with your child.”

The same can be true with the next surgery or evaluation. If your child has spent a lot of time in the hospital lately, maybe you can hold off the next medical intervention, and give your child some time at home to be a kid.

Having a child with a chronic illness isn’t easy. However, you and your family can still have a beautiful life together. You just need to find your community, consider family therapy, practice vulnerability, make time for yourself and your other children and learn to let some things go.